I will tell you what happened to me and I will tell you what I just found out. There IS something you can do if your rights have been violated.
First of all, what are the Five Fundamental Rights? Here they are, as written by the Mental Health Legal Advisors Committee:
THE ACT TO PROTECT FIVE FUNDAMENTAL RIGHTS
Prepared by the Mental Health Legal Advisors Committee
On February 25, 1998, important amendments to the Massachusetts mental health laws took effect. The law, commonly called the Act to Protect Five Fundamental Rights, Chapter 166 of the Acts of 1997, guarantees certain fundamental rights to persons receiving services from programs or facilities operated by, licensed by, or contracted with the Department of Mental Health (DMH). The law was codified in Massachusetts General Laws Chapter 123, section 23.
All persons in public or private settings now have the following rights:
• The right to “reasonable access” to a telephone to make and receive confidential calls, unless making the call would be a criminal act or cause an unreasonable infringement of another’s access to the telephone.*
• The right to send and receive “sealed unopened, uncensored mail.” If the person is present, staff may open and check mail for contraband, but may not read it.
• The right to receive visitors of your “own choosing daily and in private, at reasonable times.” Visiting hours may be limited only to “protect the privacy of other persons and to avoid serious disruptions in the normal functioning of the facility or program and shall be sufficiently flexible as to accommodate individual needs and desires.”*
• The right to a humane environment including living space which ensures “privacy and security in resting, sleeping, dressing, bathing and personal hygiene, reading and writing and in toileting.”
• The right to access legal representation:
The right to be visited (even outside normal visiting hours) by your attorney or legal advocate (as well as by your physician, psychologist, clergy person or social worker), regardless of who initiates the visit.
The right of an attorney (or legal advocate) to access, with client consent: the person’s record; clinical staff; and meetings regarding treatment or discharge planning which the person is entitled to attend.
The right to “reasonable access by attorneys and legal advocates, [including those] of the Massachusetts Mental Health Protection and Advocacy Project [of the Center for Public Representation] and the Mental Health Legal Advisors Committee”, so that they may “provide free legal services.” Upon admission and upon request, facilities must provide the name, address and telephone numbers of the legal agencies and must assist persons in contacting them. These agencies may conduct unsolicited visits and distribute educational materials, at times the facility designates as “reasonable”.
All programs must post a notice of these rights “in appropriate and conspicuous places”. The notice must be provided upon request and must be in a language “understandable” to the person.
* These rights may not be revoked but may be temporarily suspended for persons in inpatient facilities by a director or superintendent (or acting director or superintendent) if exercise would present a “substantial risk of serious harm to such person or others” and less restrictive alternatives have failed or are futile. Suspension may last only as long as is necessary to prevent
Have your rights been violated? Of course I have mentioned in here that my rights were violated at Mass General. And yes, they were violated at Walden, specifically my telephone rights. This was a huge problem at Walden, not on the Thoreau unit, which provided little enclosures for the phones so conversations could not be overheard, but certainly on the Alcott unit, where the phones were out in the hallway with no enclosures, none at all. Trust me, everyone could hear everything. It was absolutely awful.
As soon as I arrived on the unit, having already studied the Five Fundamental Rights, I saw these phones out in the hall and I asked, “Are these the only phones provided?”
“Yes,” replied the nurse, “these are your phones.” She pointed to the two hall phones.
“It states in the Bill of Rights that I have the right to telephone privacy.” The exact wording is “confidential telephone call.”
“You have to bring this up with the social worker.”
You can see where this was headed. I was being automatically denied this right…unless I got “special permission” from the social worker. The unit was breaking the law already by not having enclosures around the phones. The nurse was breaking the law by denying that I automatically have the telephone privacy right by default. It was already Wednesday, perhaps 3pm. When was I going to see this social worker? Probably not this afternoon. I know how these places operate.
As you know, I wasn’t exactly in my best shape upon arrival on the unit. But darn…what few phone calls I made while there were going to be precious to me. With so little left in my life…hanging onto life by a string…so few people standing by my side…these conversations were not going to be overheard, by staff, by other patients, or by anyone, period. I would insist on this.
There was a bit of a settling-in period, not much because staff kept grabbing me to ask questions and do examinations. I had to leave messages on people’s voicemail. I ended up leaving these messages beginning with the qualifier, “I am out in the hallway with no privacy whatsoever, but I wanted to tell you that….” I kept my voice low. This got tricky. If I lowered it so that as few people overheard as possible, voicemail cut me off, and I had to re-do. This proves my point, doesn’t it?
I guess I met with the social worker the next day. I immediately disliked her. Thankfully, I had the opportunity, very soon after, to switch back to my previous wonderful social worker I had before. I grabbed this opportunity. But meanwhile, I had to deal with the first one. Her response regarding the phones was, “We provide hall phones for patient use.” I think she said something about a phone in a room provided for exceptional situations. Of course, I pointed out, with the printout of the Bill of Rights right in front of me, “confidential telephone call,” stating that every patient has this right and that the situation does not have to be exceptional. Confidential should be the norm. The social worker said I should file a complaint.
I did. I filed this complaint with the Human Rights office immediately. Already it was Thursday, and I wanted to make sure that all this got squared away before the weekend. I spoke with the person, who said she’d definitely have someone up there to speak with me, but she did speak to the nurses herself right away and get it all straightened out. To what extent this was put in writing in my chart I am not certain. I don’t think it was adequately documented and it was definitely not “passed on” from shift to shift properly. Either that, or if it was in my chart and it was properly “passed on,” staff were selectively forgetting or flat out denying that this documentation existed and that these interactions between me and Human Rights took place.
Immediately, I was granted rights to use the “Yellow Room” to use the phone there whenever the Yellow Room was not being used by the staff or the program. The times that the Yellow Room is free are rather spotty, but it was better than putting up with those hall phones only. Fine. This was Thursday, I think in the afternoon. I had advocated for myself and I was proud. I had done it legally. I had done it politely but firmly. I knew my rights and I had not backed down.
The next day, a representative from Human Rights came to see me. She took extensive notes on what I said. Our conversation was lengthy and detailed. She had thoroughly read my complaint. She said these enclosures should be built, definitely. She went and looked at the phones herself. I wrote down her name and how to reach her.
During my many claims to my rights and requests to staff to use the Yellow Room, if I had to go so far as to mention having spoken with Human Rights, I would mention that I had spoken on the phone with the office twice voice-to-voice, and spoken in person on Friday with this representative. Staff always denied that I these conversations had taken place, saying that I was lying that I had any interactions with the Human Rights office, implying that I was delusional.
A further problem I had was that the Yellow Room was usually only free in the evening, often quite late. The Human Rights office, of course, closed at 5. Evening shift was getting more and more belligerent on this issue. There were evenings when there were three or four of them that were extremely hostile to me. I knew my rights. I didn’t take bullshit from anyone. I demanded respect from those folks. My status as “patient” didn’t mean I deserved anything less.
One night, again, I was denied use of the Yellow Room. This time, it was so extreme that I had to report three nurses. It was my duty to myself, the other patients, and the hospital in fact to report them. I was told, “There is no Yellow Room.” I was told, “There is no ‘room with a phone.'” I was told, “Do you see those phones? Those two phones in the hallway? Those are your phones. There are no other phones.” So far, I was fighting these two nurses who were telling me these lies. I told them, “You are telling me lies and denying me my rights as granted by Massachusetts state law. I have told you that I have straightened out this matter and spoken with Human Rights. Here is the written document Five Fundamental Rights and here is where it says “confidential.” See? I have that word underlined. Here is the name of the person who came up and spoke with me at length from Human Rights. What are your names? I am going to report you.” These two nurses gave me their names. They had no choice and didn’t believe I would actually do this.
Yeah, sick, delusional mental patient, right? Think again.
A third nurse saw me grabbing the Human Rights complaint form and must have gotten scared. She came up to me and said, “C’mon, Julie, let’s talk. Just talk to me. Come to the dining room.”
Already, I was suspect. Was she going to talk me out of reporting these nurses? Or was she attempting to see my side of it? Or was she trying to get me to back down? I was on guard. I briefed her. That is, very briefly. She said, “You have to understand. We do indeed have a room with a phone. But it’s not for just anyone. You have to ask for it discreetly. Quietly. Don’t make noise. None of this talk about ‘rights.’ We don’t want everyone knowing about this phone. Not the teenagers, because they will talk to their boyfriends and make trivial calls and be on it all night. You can say, ‘I need to call a family member about a divorce,’ or, ‘I need to call my husband about my child’s situation at school,’ something like that. We will accommodate. Just for certain people. Not for everybody, okay? Now you can have the phone. I will stand right outside, and write in my chart until you are finished.”
I reported the third nurse. All patients have the Five Fundamental Rights, no matter what their age is. A young teenager has the right to make a call to her boyfriend in private. A person has the right to make every phone call in private no matter what the reason, and should not have to explain who they are calling and what they are going to talk about to staff, because this in itself is a violation of privacy. I wrote in my report that it was inappropriate for nurse #3 to sit outside the room while I was making this phone call.
I was at Walden for sixteen days. Denied, denied, denied. Sometimes, I had to fight, and then wait and wait and finally it would all get straightened out but there would be a long delay by the time I finally got the phone. One time, they claimed they had to put a call into someone. I waited two, three, four hours. It is 2012 and it is hard for me to believe that in four hours they couldn’t reach this person with e-mail, home phone, cell phone, and texting. They were bullshitting me.
Very late in my hospitalization, I think three or four days before I left, the social worker said that they had just discovered that I had been calling into this blog, that is, posting by telephone post. She asked me to stop blogging. I told her that I thought they’d been aware that I was blogging, because at Thoreau they were aware that I was blogging and encouraged me to blog. I do recall talking to staff about this now and the staff over there did encourage me to blog. But the social worker explained that they had been unaware until now, and that blogging consisted of “online access,” and online access was not allowed on the unit. She then went on to say that occasionally she allowed patients to check their e-mail.
I told her that this made no sense to me. Audio posts are output only. I receive no input. I only speak. There is no gathering of information. It is nothing like Facebook or any social media like that. I am simply making a phone call and speaking and it is not affecting my treatment. I do not name names in my blog. You guys know that.
Of course, now I am so fucking angry right now that I am totally blasting this situation people/places to bits as we speak.
I conceded immediately, though. I said I would not blog. Little did I know that I would no longer be trusted, that my word would not be believed. I said that I would not blog. They treated me like a child, like I would sneak. My right to the Yellow Room was immediately taken away without explanation.
I say without explanation. I was in shock. I went to the Five Fundamental Rights document and assumed it was a “safety” issue. I figured maybe they thought I was going to hurt myself. This is the only basis under which they can suspend my phone rights. It took hours before I could speak to a staff person who would reason…that is, be polite to me. She told me, “Because we think you will blog.”
It was really all over. Treatment, everything. I was such a threat to them. No wonder the looks. No wonder the hostility, the coldness. Some of them were damn anxious to get rid of me. Like scared of me. Looking at me through the corners of their eyes.
I had to leave. I just couldn’t bear the disrespect. For sixteen days, I’d been fighting for the phone, just to make simple phone calls without the whole unit overhearing. And just about every time I asked for something I had the right to by law, I was denied, denied, denied. I felt like I was being treated as less than human. I couldn’t bear it anymore. This was detrimental to my mental health. During the last days, I don’t know how many days, I was going downhill. I knew, for my own sake, I had to save myself, and leave. This whole rights issue nearly ruined my treatment. I told them this. You bet I did.
The Five Fundamental Rights is law. Massachusetts state law. Just the same as drinking and driving. Respect the fucking law.
No, I will not shut up. I never do.
Have your rights been violated?
File a report with M-Power. Go to this document here:
Contact M-Power. They are good people. I am going to do this. Remember what happened to me last summer at Mass General? Oh boy.